Sorry today’s news is not good. Having thought that the roller coaster was slowing down after a week in intensive care and the gradual control of his lung infection, Jacob has now been faced with three fits of increasing magnitude.  The awfulness is very hard to bear. We are at a loss to find anything to say but to share the huge feeling of panic and fear we feel.  The last fit lasted two hours and though partial (he was largely conscious and the seizure only involved his face, neck, shoulder and arm) left Jacob’s left hand uncontrollable and the use of his hand has not come back yet twelve hours later.  You know how terrifying that is for him and all of us. He now lives in fear of repeats despite heavy medication to control the fitting.  He is now on high degrees of sedation. Today he has a CAT scan and MRI scan and we hope an assessment by a neurologist, but no one yet knows the cause of these fits.  He has also just developed another unexplained temperature and until the lung infection, new temperature and fits are sorted he cannot get back to his leukaemia treatment.

He is frightened, bewildered and depressed and so are we, but even in his fit he was thanking nurses and saying how kind they were.

Jonathan, Cherry and Jake.